Fibromyalgia and I.b.s: My friend has... - IBS Network

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Fibromyalgia and I.b.s

BlueDevon profile image
24 Replies

My friend has fibromyalgia and the symptoms that she has ,so do I.So I started researching fibromyalgia and there seems to be a link between these two diseases.

A lot of fibromyalgia sufferers have bowel problems.Constipation or diarrhoea.The feeling of not a proper evacuation.Or even feeling you want to go when really you don’t.

I also have pains in my legs and knees and sometimes my hips and back.

Sufferers feel exhausted and anxious.It also comes with depression.

So I’m just trying to maybe give people an idea of maybe they haven’t got I.b.s But fibromyalgia.

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BlueDevon profile image
BlueDevon
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24 Replies
Maureen1958 profile image
Maureen1958

Hi BlueDevon, yes you are spot on, both IBS and Fibro are linked. Some people start with Fibro and go on to incorporate IBS and others, like myself, start off with IBS and go on to incorporate Fibro.

I must say that I have no diagnosis of Fibro but I am certain that is what I have. The IBS started nearly 40 years ago then after about 15 years I started having pain in my legs which over time went down into my feet and eventually my toes. Then somewhere along the line I started getting pains in my arms, hands and fingers. More recently the pains have gone up through my neck into my head and face which I assume it TMJD (Temporomandibular Joint Dysfunction). This means I have pain in my chin, mouth, teeth, eyes, ears. Also have a lot of headaches and migrane symptoms too.

So now I have pain literally everywhere in my body, along with the IBS symptoms and headaches and also have a lot of nausea to. I used to be sick with it but don't seem to be able to be sick now (a shame because I felt better if I was actually sick!).

Anyway just wanted to say , I am with you on this one!

BlueDevon profile image
BlueDevon in reply toMaureen1958

Thank you so much for replying.

I’m sorry to hear how much you seem to have to put up with.

I looked up the twenty symptoms of fibromyalgia on the internet and I’ve got them all.

My friend suffers from fibromyalgia and she takes Amitriptyline.Well I’m on that already for depression and I.b.s symptoms.

Apart from that her doctor just told her to do exercise .But sometimes you just can’t.Im sure you understand that feeling.

I thought I only had one flipping illness now it seems I might have two!

Take care Maureen and I hope things improve for you.

Edgar77 profile image
Edgar77

this is me. Several Dr have said it could be fibromyalgia and I am trying to get it confirmed one way or another. I have celiac disease and restless legs syndrome also linked to the condition.

BlueDevon profile image
BlueDevon in reply toEdgar77

Thanks for replying Edgar77.I think a lot of us could be suffering from fibromyalgia and don’t even realise it.

I’m fed up with feeling like this.Im booking a doctors appointment.

The receptionist is so rude in my surgery and makes you feel like you’re wasting their time.

Good luck.

Sparrow58 profile image
Sparrow58

Hi BlueDevon

I posted on here recently to say I have bad legs I went to Gp she said it is anxiety and to do breathing exercises. What is your pain like? Is it like your legs are weak and feels like a tightening. I had it really bad yesterday and then I had 3 BM and it subsided to a mild ache. Mine started a year ago after a really stressful time. It started as just a small ache in one leg. Now in both and my shoulders. I went to a Chiropractor and he treated my back etc and took an xray. No bone problem, just an empty purse. It drives me mad. What about you?

BlueDevon profile image
BlueDevon in reply toSparrow58

It usually starts in my knees and then goes into both legs.Its just an ache.It feels like you’ve walked for miles.I have days where it doesn’t hurt so much but then days where it just aches and aches.Im booking up to see doctor as we speak.

Good luck.x

Sparrow58 profile image
Sparrow58 in reply toBlueDevon

Thank you, you too. I have also contacted my Gp again with an update of my condition. Why are these things not treatable with a tablet, its so annoying and depressing. All the best x

BlueDevon profile image
BlueDevon in reply toSparrow58

I also suffer from interstitial cystitis and also dry eyes where they just start prickling and then just run and run.These are all symptoms of fibromyalgia.

If you google it there are about twenty symptoms and I’ve got them all.

Things are coming together in my mind what’s been wrong with me all these years.The doctor told me I had I.b.s fifteen years ago.Then these new symptoms started after I lost my Mum six years ago.

I then had covid this January and then a nasty virus in August.It can take these events like a virus or a traumatic event to trigger these symptoms.

I think everyone thinks I’m a hypochondriac but I don’t want to feel I’ll all of the time.

I’m sure everyone reading this will understand.x

Leo70 profile image
Leo70

I have had symptoms of IBS and fibromyalgia for years and feel they are definitely linked and unfortunately my youngest daughter seems to suffer from this too.

BlueDevon profile image
BlueDevon in reply toLeo70

Thanks for replying.Im trying to get a Doctors appointment soon.Ill try again Monday.

Sorry to hear you are suffering and let’s hope your daughter improves as well.

My Mum used to say these things are sent to try us.She was certainly right there!

I have had fibro for 20 years- diagnosed. I’ve had ibs a few years but never had a bad flare until recently. I’ve also just recently been diagnosed with spondoloarthritis, but what is in my back/ neck/ arms is definately the fibro - no radiographic evedense of the arthritis in these places. I think personally if you do think it’s fibro please let the dr do the pressure point test to confirm. Fibro symptoms are also same symptoms of many many other ailments or disease. Including anxiety, arthritis (different forms) IBS, depression, mental illness, etc. get a definitive diagnoses, because it sure isn’t something you want! Lol

Maureen, I’m no dr bit could you have peripheral neuropathy instead? Or arthritis, lupus, etc? Your symptoms just seem so very different then why I go thru with mine. Good luck!

Also there are other drugs that work together for fibro. I’m on a regimen of gabapentin, cymbalta, trazadone, (for sleep).

The others are for nerve pain.

Good luck to you all. Feel better.

BlueDevon profile image
BlueDevon in reply toIBSsucksallthetime

Thanks for replying.I didn’t know there was a pressure test that the Doctor could do.

In a way if I have got fibromyalgia at least I’ll know what’s been wrong with me and it’s not all in my head.

I’m taking Amitriptyline for anxiety and depression at the moment,I’ve heard they do prescribe this for fibromyalgia.

It’s just hard isn’t it.I want to get on and live my life.

IBSsucksallthetime profile image
IBSsucksallthetime in reply toBlueDevon

it is hard! All of it! And yes I was so happy to get a diagnosis even though there wasn’t a cure, at least I wasn’t going crazy and losing my mind. ( I felt like the GP thought I just wanted pain meds).

I will say amytryptaline is something that will slow motility so helps but not a big help overall long term if you have IBS-C.

BlueDevon profile image
BlueDevon in reply toIBSsucksallthetime

That’s the trouble with Amitriptyline.I can remember when the Doctor first prescribed it.He also gave me Fybrogel and I didn’t know why.

I then looked it up and realised it causes constipation.Ive tried to wean myself off of it but I began to feel so ill.I wish he’d never prescribed it now.It has helped with my anxiety and my I.b.s at first.

But it’s not a great thing to be on I think I’ve been on it for two years now.

Thanks for replying.

IBSsucksallthetime profile image
IBSsucksallthetime in reply toBlueDevon

I am sorry. They had given me lorazepam for my muscle spasms in my back, it helped and for my severe anxiety. Unfortunately I took it for a few years, less than max dose but then tried to wean off it very slowly. What happened is I went thru such severe withdrawals I had to be hospitalized. I lost time, couldn’t sit still, shook violently, lost memories, and those are only what I remember. It was horrible. I didn’t even realize that’s what it was, it was just from long term use. I seriously understand. 😞

violetmycat profile image
violetmycat

Hi I have been quite ill in hospital with ulcerative colitis plus pneumonia. Before I had UC I had Polymyalgia rheumatica which then I was on a very high dose of Steroids. And these were continued when I developed UC. I came off the steroids gradually but what happened then PMR came back with vengeance. You can't win!

BlueDevon profile image
BlueDevon in reply tovioletmycat

sorry to hear you have been so poorly.Try and stay positive but it’s not easy is it?

At least you’re out of hospital now.You can’t beat your own home.

I really hope you start to feel better soon.x

Stressedoutwoman profile image
Stressedoutwoman

I’m exactly the same just had tests done no inflammation so getting referred to see if think fibromyalgia my legs ache and my hip and back and face and daily headaches

I have ibs C have had it years

BlueDevon profile image
BlueDevon in reply toStressedoutwoman

Hi Stressedoutwoman,this made me laugh!

I also get headaches most days,I thought it might be where I don’t drink enough or just stress.

I just want to have a diagnosis.If I haven’t got Fibromyalgia, god knows what it is.

Sometimes life is just rubbish.But I suppose there are plenty people worse off than me.x

Stressedoutwoman profile image
Stressedoutwoman in reply toBlueDevon

yep it’s crap (if only I could 🤣🤣) I suffer with anxiety and stress very badly my son has an incurable condition and is constantly having operations but he doesn’t let it get to him and I think I need to pull up my big girl knickers and laugh in its face and carry on with a smile like he does

violetmycat profile image
violetmycat

Thanks for your best wishes xxx

Iesgobdafydd profile image
Iesgobdafydd

I also get pains in various parts of my body including headaches - back is particularly frequent, fatigue most of the time, emotional vulnerability particularly to anxiety, brain fog and difficulty concentrating; and I've had IBS in the past but gotten rid of it. I have a host of other symptoms many of which fluctuate or are infrequent, which include occasionally eyes stinging or running without explanation and occasional clicky knee joints, dry skin and dry brittle nails. Eye focus fluctuates sometimes. I hardly ever seek out touch any more because it doesn't feel the same as it used to, and is sometimes hypersensitive; sex became usually uncomfortable and we eventually just stopped altogether.

My GP was going to diagnose me with fibromyalgia last time I saw her, but agreed to refer me to a rheumatologist instead when that was my preference. Neither of them did the pressure test; the rheumatologist decided fibromyalgia was incorrect, did a test for joint hypermobility and decided that was what I've got (although I only scored 5/9, not particularly high).

I believe my symptoms are caused by TMJD which - because my joints are a bit more flexible than is typical - has managed to spread its distortions outside the normal area TMJD is confined to, the jaw, head and shoulder area. I've had intermittent throbbing for years and years in the vicinity of a childhood dental injury - which I took to be from scarring and ignored - and in adulthood I had a second injury in almost exactly the same place. As I work on loosening my connective tissue, I can often feel it moving and pressing in that same place. I think one or both dental injuries were the original cause.

If I hadn't come across a description of TMJD on this website and had a eureka moment with it, and been fortunate enough to be able to develop my inner awareness to feel the sensations caused by my connective tissue moving and loosening, I might well have been persuaded that what I have is fibromyalgia. These conditions seem to be so poorly understood, who knows maybe it is fibromyalgia - I don't think I would pass the pressure point test, the only points I've noticed I can reliably get pain by pressing gently are in my neck - but also, when I press on most of the places described in the pressure test, I noticed my connective tissue starts moving fast in that area, so possibly if I hadn't done all the work I've done on loosening the connective tissue, it might hurt there instead.

Lt63 profile image
Lt63 in reply toIesgobdafydd

I have fibromyalgia and IBS, and I to have stinging and runny eyes as well, so it must be related to the fibromyalgia

Lt63 profile image
Lt63

I have fibromyalgia and IBS

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